Posts Tagged ‘helping a loved one and being advocate is much like writing a book’

Dear Writers/Caregivers/Advocates for Loved Ones,

Coach Teresa LeYung-Ryan here . . . I see how helping a loved one/being an advocate is so much like writing a book.

My papa has been diagnosed with Parkinsonism by his neurologist. If Papa is telling his story, he would be the first-person narrator; if I’mtelling the story about him, then I would be the third-person narrator.

A book (story) consists of one main character (also known as “hero” or “protagonist”) or multiple main characters and other characters (other archetypes), a subject matter that is discussed repeatedly (“theme”) and at least one plotline (“what happened?”). The merging of these elements helps the writer show the hero’s journey.

Helping a loved one/being an advocate consists of at least 2 protagonists (YOU and the loved one) and other archetypes (physicians, healthcare and social service providers, other family members and friends, neighbors, coworkers, vendors, . . . the stranger who gives up her/his seat on the train for you), themes (the cause for help and advocacy and the related issues), and plotlines (the interconnected events associated with all the characters). Who will be the most transformed in the story? The loved one? You the caregiver/advocate? The person who is most transformed would be the main character/hero/protagonist. Perhaps both people will go through great transformation. Two protagonists!

I am writing – I keep a notebook for whenever I visit my papa or when I do something on his behalf- gosh, there are so many little “subplots” to keep track of! (Is this Papa’s third or last session with the physical therapist? Mary and I need to witness the exercises so that when the P.T. closes the case, we would be able to coach Papa. Did he say he wanted another heating pad? Oh my, there are at least 18 model to choose from. Gotta review friends’ advice about what is a comfortable bed and also Consumer Reports. Then Papa has to “test drive” some beds. You just can’t shop for a mattress the way you shop for a pair of shoes.

MATTRESS SHOPPING TIPS (from Sealy’s website)

Plan to spend at least one hour in the store.

Wear loose clothing and easily removable shoes.

Test out mattresses in groups of three for easier comparison.

Lie on each mattress for 5 to 15 minutes to let it fully adapt to your body.

Don’t feel rushed. It’s ok to ask for privacy.

I would add: Bring your own pillow so that your neck is supported while trying out mattresses; maybe bring an extra pillow case too.

And, I am reading the book The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, M.D. Chapter 2 is titled “A Man Walks Off His Parkinsonian Symptoms” . . . how John Pepper has been able to reverse the major symptoms, the ones that Parkinson’s patients dread most, those that lead to immobility. He’s done so with an exercise program he devised and with a special kind of concentration . . .

All the “characters” in Dr. Doidge’s books (The Brain’s Way of Healingand The Brain that Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science) and in Dr. Victoria Sweet‘s book (God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine) are guiding me on my journey as an advocate for my father. And, I just know that my mom plays a huge role in helping me.

Special thanks to Margie Yee Webb, Frances Kakugawa, Penny Manson, Debbie Ramos and her daughter Melanie who went out of their way to help me research specific items and to Mary, my sister Maria Leung, Linda Harris, Sue, Janet, and Elaine for being there in person.